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Archiver > Hypophosphatasia > 1998-08 > 0902847879


From: "Carol Clapshaw" <>
Subject: Re: [Hypophosphatasia-L] My replies to all!
Date: Tue, 11 Aug 1998 08:04:39 -0700


Dear Tracey,

We didn't mean to over load you. We are all so happy to have another list
member. We have been waiting anxiously for someone to appear.

I often feel like I am from another planet (not literally, mind you) and
have finally found people from my planet. I just understand everything that
is said. It is all both clarifying and affirming.

I know those without Hypophosphatasia would probably think this is weird or
morbid, but I don't feel that way. I am curious about what is going on with
my body and it helps to hear other peoples stories. I also feel that
special sort of kinship. I know I can describe something and the group
won't think it is weird.

I loved Marge's tooth story. She didn't have to tell me to laugh. I was
already there. I guess that is the basis of humor when you hear something
that resonates with your own human condition.

Enough of that.

Hey I think I was a toe walker too.

I probably would have died in boot camp. I bet you were wondering why you
couldn't hack it.

I was sick allot as a child too. I had my tonsils removed at about the same
time. I had lots of ear infections. That may or may not be related. When
I started to complain of bone pain I think my family just figured I was a
"sickly" child. The doctor said it was growing pains.

You started to tell us about your height. Was there something more? I too
am 5 7. That is not unusual in my family but I grew those 7 inches in the
7th grade. All of a sudden I was taller than everyone else.

I also have a straight back or a military spine. I guess that is
characteristic of Hypophosphatasia.

I would love to see a picture of you with that big tuba:-) I always had to
be different too. I was the drum majorette in junior high. I loved to
twirl that baton. I can't imagine that my fingers could do all those
intricate things.

I can barely remember when my legs hurt as a child but tell your daughter I
understand and she has my empathy. It makes you feel out of sorts. I also
had my teeth crumble like she did. I think it is important for the kids to
know all the things we were able to do and have done. This disease does not
have to be an end to much. (well maybe baton twirling:-)

I also felt pretty crummy when I was pregnant. I have four children ( I wore
a brace during my last pregnancy). They were all healthy. I had some early
scares with my third child. He was sick a lot and seemed to have some
immune dificency. He had pneumonia when he was 10 days old. He was tested
twice for cystic fribrosis. That was really scary. Now he is a healthy guy
with really no health problems.

My daughter did break her arm as a baby. He dad was holding her on his lap
and she reared back. I was in the kitchen and I heard the break from the
other room. Very strange. Aside from one finger joint my daughter has
shown any signs of the disease. I hope it stays that way. It must be so
hard to deal with your children being sick. I also wanted to mention that
she did have to stay in the hospital longer because she was loosing wieght.
Her tearducts were closed. We were scheduled to have them surgically
openned when the openned on their own. I had taken her to an old farmer
healer and he worked on her. It might have been a coincidence but I was
relieved she didn't have to be operated on. The things we will do for our
children.

I guess we were writing to you like we only had one opportunity to
communicate. I just wanted to say that I am interested in everything you
have to say, but you don't have to respond to everything at once. We have
lots of time to explore our histories.

I imagine you are really busy. Does your middle son do any kind of special
therapy? And the younger boy does he need physical therapy? You must be so
busy.

Trace, has your family always lived in Virginia? I think I mentioned my
father's family is from VA.

Thanks for taking time from your busy day to write to us.

Warm Regards, Carol
-----Original Message-----
From: <>
To: <>
Date: Tuesday, August 11, 1998 4:41 AM
Subject: [Hypophosphatasia-L] My replies to all!

>My gosh-
>
>You all are windy! I read each post, nearly as it came in yesterday, but
was
>working and unable to reply with any thought. I went to answer them last
>night, and we had a nasty storm here. It knocked the power out and we
didn't
>get it back until almost midnight. By then, all I could manage was to
print
>the emails to read later.
>
>I will try to answer as many of the questions as I can in this story:
>
>I was born in October 1963, first child. My mother doesn't remember
anything
>particularly unusual when I was very young. I seemed to sit and walk
pretty
>much on time, although she called me a "toe walker" and very awkward. I
was
>constantly falling. I lost about 4-5 baby teeth, mostly front ones, not
long
>after they came out, but at the time noone thought much of it. My sister
was
>born 2 years and a week later. She did have delayed walking, but my mother
>attributes this to fear after a bad fall. She does not have the disorder.
>
>My mother enrolled both of us in ballet, tap and jazz in order to mainly
>improve my coordination, and do it in a fun way for both of us. We were in
>preschool when we started. It seems I was forever getting sick. I can
>remember on several occasions the whole family would miss outings because I
>was always coming down with something. I was constantly getting
tonsilitis,
>so the docs decided to remove my tonsils when I was in kiindergarten,
around
>5-6 years old. When they put me under, everything shut down. I stopped
>breathing, my heart stopped, the whole bit. They had to put me on a
>respirator for nearly 3 hours before I would breathe on my own. They
chalked
>it up to a fluke, but that left me in the hospital for over a week
recovering
>from a tonsilectomy. It wasn't until 2 years later when the same thing
>happened to my sister that they began to investigate and found that we both
>have atypical pseudocholinsterase deficiency. Our bodies don't process the
>anesthesia as rapidly as they should, so we have a hypersensitive and
extended
>reaction to the drug. Luskily there are safer drugs to use these days, so
we
>can pretty much avoid it.
>
>I continued on through school. Nothing really remarkble. I lost the teeth
>early, I was never really athletic. I just couldn't seem to keep up with
the
>other kids. I was not good in sports, but I was great in swimming, and I
>think that's what helped me most when I was young. I started learning to
swim
>at about age 5, and took lessons every week for years. I loved it and I
>believe it helped a lot. My sister was always the "jock". Very athletic,
>very coordinated. I was skinny, but very very tall. I was always about a
>foot taller than anyone my age. Weird. I am 5'7" now. More about that
>later.
>
>I started having orthopedic problems in Jr. High when I tried out for
track.
>I had a lot of trouble running and had intense pain and fluid in my knee
>joints. I had it removed, at least once I can remember. Oh, by the way, I
>severely allergic to bees as well. I was stung several times as a child
and
>had to be rushed to the doctor. OUCH!!
>
>I was in the band in Jr. High and high school and played, of all things,
the
>tuba (I've always wanted to be different). I never seemed to have that
much
>trouble carrying it, but never had to go extremely far. I was in drill
team
>also in high school, and was a cheerleader briefly.
>
>About 2 years out of high school I joined the Navy. I passed the physical,
>but knew I was in trouble in boot camp when I had to run 2 miles. I barely
>passed all the physical requirements. I did pass, however. I had my
daughter
>the first year in. She was born almost exactly on time, but had problems
>immediately. First she turned blue about 5 hours after birth and they
thought
>it might be sepsus. That turned out to be negative. Then she was found to
>have dislocated hips so they put her in a pavlik harness that kept her in
the
>frogleg position for 8 weeks. This seemed to fix that problem. She walked
on
>time like me, but was also very awkward. She was about average size for
her
>age, but is small for her age now. She hasn't had many orthopedic
problems.
>She has horrible teeth. She complains that her legs hurt all the time.
She
>has not been formally worked up, but does have a low alkaline phosphatase.
>She just had a root canal because while she was eating one of her 12 year
>molars just fell apart. The other one was almost as bad, and the dentist
>gives the work he did about 10 years. These are permanent teeth. She also
>had to have baby teeth filled, but didn';t lose a whole lot.
>
>I married when my daughter was a year old and had another baby by the time
she
>was 2. This child had minor problems at birth, but nothing major. He had
>problems with his bilirubin, was a poor nurser, and got bronchitis and
croup
>and ear infections a lot. He is another story, but had no real orthopedic
>problems and is very strong. He is mildly autistic now.
>
>I had trouble with my pregnancies. My hips hurt terribly, my legs too, and
I
>always felt like my hips were going to fall out of their sockets. It
became
>nearly impossible to walk by the time I was due. I had horrible
pregnancies,
>except for my last. My third child was interesting in that the pregnancy
was
>nearly effortless. I didn't get sick that much, and didn't seem to have as
>many problems, although I was terribly worried. He hardly ever moved. I
>remember going to the OB/GYN in tears, convinced he had died, only to find
>that he was tucked away in there nice and quiet. They just told me he was
a
>very quiet baby.
>
>He was born about on time. He had meconium when they broke my water, but
>didn't aspirate any of it. I made a comment to the pediatrician about how
>tiny his face was but she basically said "all babies have tiny faces" and I
>bought it. I took him home when he was 1 day old. The next day he was
very
>sluggish and I was extremely worried. He was not just quiet. It was liked
he
>was out of it. I had him at the pediatricians when he was 2 days old, and
she
>couldn't find anything wrong, but noticed that he had lost 1/2 lb. It's
>normal for babies to lose, but she wanted to keep a close eye. We went
back
>at 6 days of age and he had lost nearly a pound. They decided to
supplement
>my nursing with bottles and formula. By the time he was 9 days old, I was
a
>mess. I knew something was worng. He alwasy slept, never ate, was very
>floppy, and had no energy. At 10 days they admitted him to the hospital
>because he would not wake up to eat for over 10 hours. The ran all kinds
of
>tests (even an HIV) and finally told me he had something called congenital
>adrenal hyperplasia, but not the classic form. They said he had this rare
>form that only changed his aldosterone level, which is a hormone that
>regulates your sodium and potassium. He is a salt waster. He needs it and
>craves it because his body doesn't make that hormone. He was in the
hospital
>until he was 6 weeks old. He also had bronchitis, reflux, and his punctum
>(tearducts) were not opened and had to be surgically opened later.
>
>Well, that is a lot there. I will write more in a bit. Need a break!
>
>Tracey
>
>
>

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